Day Zero – … but wait, there is more!

A bunch of random thoughts about what happened today with my CAR-T infusion.

As part of the “Confusion Assessment” you are asked to pick a sentence to write using cursive script, something I rarely do thanks to a life long habit of printing due to writing code in the old days. They said to choose a short sentence because you will be writing it a lot over the next couple of weeks. I chose:

𝐼 𝓁𝑜𝓋𝑒 𝓂𝓎 𝓌𝒾𝒻𝑒.

I may have mentioned that the UHN has a thing called the myUHN , an online patient portal where you can see all your appointments and test results. Between yesterday’s body swabs, and today’ blood work I had 60 new test results!

Only 8 right now, a slow day.

Just prior to the infusion the nurse is setting up the IV with some saline and then some Benadryl and getting me hooked up prior to the infusion. In a very casual and nonchalant way, without a word, she puts this bag on the IV pole.

Just in case something goes wrong…

This is what it’s all about, the contents of this little bag. “CAR-T cells in approximately 68ml suspension containing 5% DMSO” or up to 200M CAR-T cells.

It’s in there but it’s clear.

Shirley asked about the cost to process the cells and it turns out to be $375,000 USD per treatment. That works out to be $5,514.70 USD/ml

Two people, a man and a women, bring the above bag in its frozen state to my room at 3:30pm. It’s in some special container immersed in liquid nitrogen, very cold.

Something like this liquid nitrogen container.

They warm it up and check several times that it’s my CAR-T cells and that I’m the intended recipient. After that the nurse hangs the bag and the infusion is under way. In under 30 minutes it’s all done.

Everyone is very positive and affirming about me and the probability of the success of the treatment.

The gentleman on the way out stops to talk to us and says he was very “emotional” about our story and journey and stated that he was honoured to be a part of this special moment. It was very touching.

Garry is allowing me to add a few thoughts today rather than just editing for spelling, punctuation, and grammar.

So here goes!

The team that is caring for us asks a bit about us and of course I share how we met and are childhood sweethearts. That we have an amazing family and group of friends supporting and encouraging us and of course many other details. Garry has asked me to be brief so I won’t go into all the details but suffice it to say I felt we heart connected with them.

We shared the previous treatments and expressed our gratitude at having this CAR-T treatment, a wonder of modern medicine, being an option for us and that God would add His supernatural Healing power to the treatment to complete the process.

As the cells began to flow into Garry’s arm I was overcome with such a powerful emotion of thankfulness as I could feel the healing power flow into his body. It felt like I was standing on holy ground. I could sense the loving, powerful , mighty presence of God fill the room.

At that point everyone was quite emotional and of course I was crying, but they were tears of joy and thankfulness.

As Garry mentioned the young man came back in the room after completing all the paperwork and thanked us for sharing our story, that it had been a very emotional and special time for him and that he was honoured to have been part of our journey. That he would remember us and that this was not at all typical.

I also had an opportunity to talk with the woman who appeared to be in charge of the cells and she told me the process went extremely well and she was confident that Garry would respond well to the treatment. She said that our faith was an important part of our journey and that she was praying for Garry as well. We shared much more than that and when I told her that Garry had a blog she asked for the link so she could see a patient’s perspective on going through cancer treatment. She was very encouraging and I felt like I had made a new friend.

Our journey has been long and hard, but through it all we have experienced such incredible love and support from so many of you. And we have also grown in our faith and have seen the goodness and faithfulness of God in so many ways.

I will stop for now as I’m pretty sure Garry will say you need to start your own blog.

Just know, my heart is full to overflow for so many things and we love and appreciate all of you for being there for us.

Day Zero – The point of no return

It’s 1pm and the preliminaries are getting under way. I’m now hooked up to the saline IV until after the infusion which is currently scheduled for 3pm.

The overnight sleep was in fits and starts as one might expect as I got used to the room, the floor and the procedures. Last vitals were around 9:30pm and the next at 2am. As I’m the new guy they didn’t need me to wake up for the usual BP, temperature and pulse oxygen. From here on out there will be a 2am wake up call. 🙁

In addition to that there are night staff just walking in and looking around to see that you have not escaped and appear to be alive. I think at some point I’ll be able to tune out those quick in & out checks.

6am, we’re up and by “we” I mean me and my room mate. Lights on and we both get the full battery of tests, BP, Temp PulseOX, blood work, plus the questions to ensure you’re not cognitively compromised and the hand writing sample. I’m told this will be the new standard every 8 hours (or more).

After that I get a bit more sleep as we turn off the lights and just hangout in the room. Breakfast arrives while I‘m dozing and I’m on clear liquids & jello. Not sure why. In a while Shirley will arrive for a visit and she is bringing treats like Starbucks☕️ and supplies from “home” (aka Kathy’s).

Happy Camper (?)

A full lunch arrives and it’s quite good! Hot things arrive hot, really hot!

At one point in the morning a team from the ICU at Mt. Sinai (next door to PMH and connected by a walkway) show up as promised , to check in. Two young doctors introduce themselves and say they will be getting familiar with my chart and following up daily. It’s good that’s they are prepared, and I hope to never see them at their place of work. 😜

So, by about 4:45pm the infusion process is complete. There were no problems and I’m currently feeling fine, but tired, mainly due to the Benadryl and some due to the emotions of the process and the day. More later tonight or tomorrow. So thankful for the miracle.